What are our choices in caring for an infirm uncle?

September 14, 2012 1:06 PM

What alternatives exist to nursing home care for an almost senior citizen with severe epilepsy? Lots of details follow...

My uncle, just shy of his 64th birthday, cannot live on his own any longer. He has always had severe epilepsy and has petit mal, grand mal, and tonic clonic seizures several times a day. He has often injured himself during the grand mal episodes. He also has some difficulty preparing meals for himself and doing basic daily household chores.

Until a few months ago, he lived with his wife, who has since left (and is not returning). He has one nearby relative who sees him perhaps once a week, maybe less often than that, as well as an old friend who visits once every week.

He has had an in-home health aide come to stay in the house for a few hours every day, but this is expensive, and with some recent further health complications (malnutrition, a broken bone), he really needs someone to be with him most of the day.

Financially, he is only going to be able to pay for a high level of at-home care for another few months. After that, he will have no real income apart from disability benefits that amount to a few hundred dollars each month. None of our immediate family is able to become his primary caregiver, either in his current home or in ours.

My mother thinks he will be taken care of best in a nursing home (one that will accept him as a Medicaid patient when his funds run out), and while I don't disagree, I want to hear from the Green about other alternatives that we might be missing here.

He will not want to go to a nursing home and will probably have to be declared incompetent, placing my mother in conservatorship. This will be a real nightmare, and before we undertake any of this, I want to hear about what we might be missing. Thanks, everyone!

posted by yellowcandy to human relations (7 answers total)

Is he a veteran? There are veteran benefits that you can apply for, if so.

Sometimes the in home health care people are actually cheaper 24/7 than they would be just for a partial day. (Maybe 16 hours or so.)

You could look at having a CNA come and live with him, and have room/board be a part of the pay, if that would help. I think that sometimes CNAs or former CNAs will do this once they do not want to do CNA work in a facility any longer.

I believe there are also church groups who have people who volunteer their time to visit/sit with the elderly, and possibly even provide some meals.

There are retirement homes with once weekly cleaning and meal plans (example is Wesley Woods Towers in Atlanta) - some of those have personal care floors. However, they may or may not take medicaid.

If you're interested in the types of questions that we asked when visiting both rehab places and assisted living/nursing homes, memail me - we just went through this with my grandmother.
posted by needlegrrl at 1:37 PM on September 14, 2012

There are service dogs trained for epilepsy care; I believe that they are trained to know when a seizure is coming and alert their owners, who can then go into recovery position somewhere safe. Maybe this could be an option?
posted by windykites at 1:42 PM on September 14, 2012

Is this in the united states, and if so, which state? My impression is it varies a lot by region. what resources are available.
posted by selfmedicating at 1:55 PM on September 14, 2012

No, he's not a veteran.

A live-in CNA might be an option if the person accepted housing as part of the salary. But quite honestly, I'm betting the costs there would be high enough that this would only extend his ability to live in his house for another few months at best.

Having a seizure dog wouldn't make much of a difference to him, I suspect. And he's not in good enough shape to care for a dog himself.

This is in Detroit, MI.
posted by yellowcandy at 3:38 PM on September 14, 2012

This might be totally not realistic, but if his house is large enough, could you find another person or two who is in the same situation to live there and then have a CNA live there as well, splitting all the costs?
posted by Vaike at 4:25 PM on September 14, 2012

Medicaid in Michigan will pay for home care services for the "elderly and disabled" which it sounds like your uncle is. A good place to start would be to talk to a social worker who is knowlegable in the various programs that he might be eligible for, or become eligible for in the near future. His doctor can probably refer him to someone.
posted by The Elusive Architeuthis at 5:05 PM on September 14, 2012

One alternative might be assisted living. It's a considerable step above a nursing home, but but does provide meals and meds and cleaning and links to community resources, plus there are staff members available at all times to assist him if he gets into trouble. It costs a lot if you pay privately, but if your only income is disability, they'll usually take the whole thing and give you a small monthly allowance for spending money. It hurts to give up nearly all your money, but a lot of disabled elderly people opt for this as one step between individual housing and a nursing home. You might consider, though, that if your mother becomes his conservator, she might be held responsible for funds for his care out of her own income. I'm not certain of this, but before she declares him incompetent and takes on his dependence, she/you might want to check into the details on both sides of the situation. I do know that if a person has an income limited to social security/SSI and they move into an assisted-living facility or nursing home, they'll wind up with Medicaid to cover the rest of their monthly bill, and I'm not sure he can qualify for Medicaid at all if he has a guardian/conservator with an income that can be used instead - from the standpoint of the State, who doesn't want to pay anything unless they absolutely have no choice.

Good luck - hope you find the right situation for him. I have an elderly friend with epilepsy, but his is under better control most of the time and, temporarily at least, he's living by himself in an elderly-only apartment building.
posted by aryma at 11:09 PM on September 14, 2012